Thursday, February 19, 2009

Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness.

How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.

One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.

Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.

On dating, one young woman said, “When I was first diagnosed, I wondered if guys would be disgusted knowing there’s a tumor inside of me. I felt tainted. Of course, I didn’t want a guy to go away when he found out I had cancer, but I felt like it would be natural if he did. Who signs up for that?” (47)

Through these patients, we see examples of people who remained despite what they did not sign up for, and relationships that could not stand the strain. Rosenthal’s own ultimate love story gives solid context—it inspires yet does not overwhelm.

On the idea of surviving, a male patient said, “Once you’ve had cancer, people like to think of you as a superhero, like Lance Armstrong, but I’m no Lance Armstrong. I don’t go for that image. Cancer recovery has become so romanticized, as if this one event suddenly made me a whole different person. I don’t think that’s the case.” (94)

Of course, these are just snippets of the many conversations about family, marriage, death, health care, and other topics that fill the book. Each story is as compelling as it is unique, yet Rosenthal’s voice carries the book. Upon receiving her diagnosis of thyroid cancer she writes,

“My first thought was the opposite of ‘Why me?’ Why not me? Why a fifty-five-year-old truck driver, a nine-year-old in a pediatric unit, or my seventy-seven-year-old grandmother? Of course, me. Why the hell not me? This life is breakable, and I’m no more immune to pain and suffering than the next person.” (3)

Perhaps it is this attitude that I appreciate the most, one that is devoid of self-pity, one that seeks to bring truth to the reality of so many patients for whom the word “survivor” is a loaded term, who do not couch suffering or pain or fear in palatable ways when sometimes they aren’t meant to be palatable.

That isn’t to say the stories aren’t encouraging, insightful, or ultimately inspiring—they are, because they are real. They are gritty, honest, often funny, and more than anything else, they represent the individuality of the patient experience. This is something Rosenthal is keenly aware of, and her awareness—respect, really—of this individuality allows the diverse reactions and adaptations to living with cancer to co-exist so well.

Despite the differences in diseases and outcomes, I found so many interesting parallels between these patients the ones I know from writing about and living with chronic illness. If you’re a young adult cancer patient or know someone who is, you will really benefit from this book and all its resources. More than that, though, the book puts out there a central truth that not enough people know:

There's no such thing as "too young" for cancer.

Among the many universals in this book, I think many of my readers can relate to that sentiment all too well.

4 comments:

Thank you for this post. I just got off the phone with a nurse at my oncologist's office who felt the need to point out to me (as if incredulous herself) that I was the youngest one of "theirs" to be on the treatment I will soon be on. I don't want to be in that group, or have that label. It made me feel like a freak for having the diagnosis I have at this age and it didn't help to have that pointed out to me by the nurse! I too shy away from relationships because I don't want to drag anyone else in to this crazy medical life (and this certainly isn't the future most guys my age foresee for themselves), and like the person you wrote about, I also have never stopped to ask "why me?" Instead, I have always asked, "Well why NOT me?" Thank you for this post!

Thank you for such a great post. My sister was diagnosed with breast cancer at the age of 35. She had a five month old baby and had no idea she had cancer. One day at work they were offering free mamagrams for women 35 and older. She started not to take it. After all, she had been to the doctor many times during her pregnancy, and she was only 35. Women don't get breast cancer that young. She finally decided to have the mamogram. Since it was free what could it hurt. Little did she know her life would never be the same after that. They discovered she had a tumor in the middle of her left breast. Because of where it was and my sister having large breast it could not be felt. If she had not had that mamogram that day, by the time they would have known it existed, it would have been to late to save my sister's life. She had the cancerous tumor removed and thank God she has been cancer free for 17 years now. No matter what the illness and especially cancer, you are never to young. I am glad more people are beginning to realize that most diseases aren't a respecter of persons. Young or old, we're all susceptible to being ill.